To not want to be a parental carer in future?

[janeseymour78]

My mother has been a carer for the last ten years to her parents. She partially did this so that my grandparent could stay at home. At the beginning it was very hard and time consuming and she said 'if I get I'll like that in future please just put me in a home'. I would argue she has done barely anything with her life aside from this in that time.

The other day she said that homes are terrible places because anyone that goes there dies within months of arrival. She also commented on how much costs had been saved by keeping grandparent at home. So this change of tune makes me think she now expects me to give up my life in a similar way if need be.

I have always had a complicated relationship with my mother - she wasn't a great parent due to her own issues and acknowledges this.

Recently I have started thinking she is getting older and I should consider talking to her about if/when she gets ill in future. About how we would handle it. AIBU?

@Useranon1

and all the PPs who would and are caring.

All well and good. Hats off to you, truly.

But how do you cope with a (especially a weighty) person who needs turning or getting out of bed in the middle of the night? The washing if they cease to be continent? Getting them to the loo? Keeping them safe if they get demented and wander around at all times of day and night, forgetting to turn ovens off or escaping out of the house?

Especially if you have a job and children. And don't live nearby - and neither do your siblings (or they're not interested).

I had a relative who had dementia but whose family lived within 10-20 minutes of her (walking). All the 5 daughters and their children worked a rota to clean, feed and sort her out and give her company. Even then, in the last two years (they were all working and some on shifts) they employed a night nurse between them along with the very basic social care she got.

My DM didn't want us to do any of this and was lucky enough to afford carers. However we were mostly around despite jobs and children to do what she wanted - which was talk.

You employ carers. I have also been there before and it's awful. I hated seeing them like that and the relentless of it is so wearing. But for me, not as wearing as knowing they were helpless somewhere unfamiliar.

As they got older and needed a bit of help, I found it exceedingly simple to spend a bit of time pitching in to help them.

It's good that you could do that. But I expect it wasn't things like scrubbing faeces out of the carpet at 4am, changing their clothes & strip washing them. Or changing dressings & cleaning infected wounds trying your best not to hurt them. Because social care were so swamped they couldn't send anyone out.

[quote crosstalk]@Useranon1

and all the PPs who would and are caring.

All well and good. Hats off to you, truly.

But how do you cope with a (especially a weighty) person who needs turning or getting out of bed in the middle of the night? The washing if they cease to be continent? Getting them to the loo? Keeping them safe if they get demented and wander around at all times of day and night, forgetting to turn ovens off or escaping out of the house?

Especially if you have a job and children. And don't live nearby - and neither do your siblings (or they're not interested).

I had a relative who had dementia but whose family lived within 10-20 minutes of her (walking). All the 5 daughters and their children worked a rota to clean, feed and sort her out and give her company. Even then, in the last two years (they were all working and some on shifts) they employed a night nurse between them along with the very basic social care she got.

My DM didn't want us to do any of this and was lucky enough to afford carers. However we were mostly around despite jobs and children to do what she wanted - which was talk.[/quote]
Absolutely. Caring comes in many different ways and a huge factor is the persons needs. My mum does have dementia but she is not aggressive can still mobilise and knows who we are and where she is. She's had vascular dementia for 9 years and it's progress has been slow. I am also a nurse and so far happy with my choice to do this albeit with the help of carers. But if mum changed and became aggressive or became a danger in the home I would not put my family through that and she would go to a home. Everyone has a limit.

Nine years ago my dad died and I became the carer for my mum while having a home, a husband and five children. We had a lot of fun together, she was very generous and loving towards me and my family and she and my dad were wonderful parents. But as her physical and mental abilities deteriorated so did our relationship. Caring for her was not "a privilege". It was a chore, a dirty, miserable, thankless chore. Even with the support of two care visits a day provided by the local council which I had to pay for because as far as mum was concerned she had no need of them. I was selfish and lazy and put my own needs before hers.

Then last summer she collapsed in the bathroom. Although the paramedics who came to help her up didn't find anything wrong the carer was concerned and felt mum may have had a stroke. Thanks to her support and the local surgery she was admitted to hospital, then into rehab and from there to a local nursing home.

It was not an easy decision for me to make and it was a very difficult conversation for me to have with her but her needs are such that I can not meet them at home, even with support from carers etc. She is doubly incontinent, confused and agitated and needs to be hoisted from bed to chair to wheel chair etc.

I am so relieved that her day to day care is no longer my responsibility.

I am doing all I can to make sure that my adult children and my husband know that I do not want them to be in the position I was in. I tell them regularly with humour and seriously, that they are to live their lives independently and not sacrifice their happiness to keep me at home.

I still love my mum and week by week I can see that my feelings for her are changing. I am beginning to see her as my mum again instead of as a very difficult employer.

My Mum, after years of saying she wouldn't want us to have to care for her, would be responsible with downsizing and eventually go into a home, seems to have had a sudden change of mind in her mid-70s. There are now snide comments about me working full time and how much she sacrificed to look after elderly relatives. We've moved closer to her - we're now 2 hours away rather than 4-5 hours - but we don't see her that often. Only 3-4 times per year even before Covid. She's never been interested in seeing more of her grand-daughter or being more involved. We don't really get on and having her to stay at Christmas used to drive me mad!

I can't care for her, or even do shopping and laundry as we're too far away. I wouldn't spend every weekend travelling that distance to so it, although I'd organise an online shop etc. I've been trying to encourage her to look at bus routes etc for when she can't drive any longer. We're about to buy a house with an adapted downstairs for a disabled person and she's been dropping hints about it. We actually want it as WFH space!

I think a lot of posters have no idea of the intensity that is needed for some forms of care and as @OverTheRubicon said, the decision that a care home is needed is nothing about whether the person has ‘earned’ the care from children or not.
Care needs can be incredibly diverse and varied, and the other responsibilities of those doing the caring similarly varied.

My Dad is currently my Mum’s carer and it is eating him alive. I do what I can but I honestly dread what would happen if he was taken ill, say, I don’t know how I could manage her care needs and my working hours and the basics of caring for my five year old. That’s without a much loved Aunt in a care home 45 minutes away with complex needs that I’m also responsible for.

For the OP I would urge getting it talked through whilst it is more theoretical. Once (potentially, I very much hope you don’t get to this point) you are in the thick of it it will be much harder.

There are varying degrees of care which may or may not be possible for an adult child to provide to their parents either out of financial limitations or practical.
A lot of people needing the type of care that requires a care home need 24/7 care. Not everyone could afford to give up work to provide that, or offer it in a practical sense either if they have young children , or are unable to deal with practicalities of lifting, bathing, changing a grown adult.
My dad had carers to begin with but it soon became clear he needed more than 4 x a day visits. It wasn't possible for me and my siblings to manage ourselves and we thought it was safer for him to be in a care home with 24 hour support.

“But if mum changed and became aggressive or became a danger in the home I would not put my family through that and she would go to a home. “ which is exactly what I tried to do and it still was a long torturous process because my mother believed she was absolutely fine . She defied everyone gps health services consultants and the social workers . Because she was not physically aggressive there was nothing I could do . We even got as far as a Mexican stand off in the carehome garden one time . Capacity is quite decision specific in the law . It was horrendous because no one could help me ( although I realise my mums case was quite extreme )

I think there would be little point in having this conversation. If your mum has capacity, you would not be able to force her into a home in any case. If she doesn't then you would not be having the conversation anyway.

You employ carers.

Who don't come free of charge. They're not cheap and costs can escalate hugely depending on what you need them to do. Not an option for everyone.

If the parents have under 23k in savings then they’d pay about £80 per week towards a care package.
That’s what I did with my DM, all good until she hit one of them.

Mexican standoff. That's exactly what I expect to happen on Thursday. I'll come back to this thread and update if I have the mental energy.

What is a Mexican standoff?

@cansu

I think there would be little point in having this conversation. If your mum has capacity, you would not be able to force her into a home in any case. If she doesn't then you would not be having the conversation anyway.

This kind of thinking is storing up trouble for later. If someone knows that their children will not be taking over physical care and support, it's an incentive to for example look into a bungalow or flat Vs staying in a harder to manage terrace house. No good if mum sells her house and spends all her cash travelling around Europe in a camper van, only to find that actually her daughter doesn't want to put her up in the downstairs bedroom, and that as all her savings are gone, she's scraping by on her state pension, or being put into whatever home the council can find a space in.

@geekchicz. That’s such a sad story and unfortunately, it’s the reality of caring for many people. 💐

I don't think the issue is that people don't understand that caring is hard. It's just that in the end, it's often non-negotiable. Barring cases where a child won't get involved at all - and there are valid reasons to do that - even if you do place a parent in a home, there are significant care demands in many cases. People get old, someone has to care for them, and the options may not be great whether it is at home or in a facility.

While venting or discussing these kinds of stresses can be helpful, I'm just not sure how helpful it is to frame it as something we want or don't want. I want my parents to die like a friend of min's dad - he went for his daily walk, sat down on a bench, and was found dead still sitting there two hours later. But chances are like most other people they will be in need of significant support for some years.

Does your mum own her own home. My mum did, she got dementia and sold her home to fund her care. There was no way me or my sister could have looked after her at home. She needed a lot of care we could not give. She lived for some years in the care home at the end of her life.

I really think having to look after elderly relatives is very hard, especially if it is a full time job leaving no time for other things. I don't expect my kids to look after me.

Please do not feel guilty, your mum made her choices, maybe she felt she had no choice, but I think you do.

@geekchicz that sounds nightmarish

My DM has been in a care environment for over 6 years, so she hasn't fallen into the gap yet...

You can only do what you can. I too find Mum incredibly needy, have been told she was a better daughter to her mum than I am to her etc.

it hurts like hell, and i know I am a good person but there is such a thing as self preservation too....

Hell would freeze over before I'd put my parents in a home. I've done the caring before and yes it's awful, but its better than knowing they are being ignored for long periods of time and possibly mistreated and wasting away, as I've seen happen.

Surely if someone is going to put their parents in a home then they do some research and choose a good one? My friend had carers coming to her DM, plus help from her, and the best neighbour in the world who was in and out all day checking on her. She then broke her hip and ended up in a home - and my friend can't believe the difference in her. She has put on weight and rather than dying in a few months, as my friend expected, she is doing really well. My friend was very reluctant to put her DM into a home and now sees that it was the best possible outcome.

I don't live in the UK, but are care homes there really as bad as some posters suggest? Any here which I've had experience of - my own DM was in two, and thrived in both (the first one closed due to low numbers), and all the homes in my town have good reputations.

Sounds like she's earmarked you for her care, all right.

If she's anything like my relatives, she could be very ill, immobilised and bedridden for a long, long, long, long time, I'm talking decades here, before she dies.
And then if she deteriorates badly, she will need lifting and carrying, feeding, intubation, changing pads, turning in bed etc.
That needs professional care and more than one pair of helping hands.

@knittingaddict

Some of the posts on here are making me . Have a bit of empathy for those with less than lovely parents FFS.

Exactly. My parents expected me to do a 35 mile round trip any time of the day or night every time one of them was incontinent. Dad refused to pay for Carers and cancelled any care package arrangements made on hospital discharge or by me. ‘You’re a nurse, you’re used to cleaning up people’ was my mother’s attitude. The fact my 2 sisters lived within a mile or so but ‘didn’t like clearing up shit’ was fine. Resentment? You bet. My parents had more money than I will ever had and could easily have afforded carers 24/7 if necessary. Eventually both had to go into a nursing home, they should have gone months earlier.

Yanbu. This is why all should be paying into a private pension, so that they can afford decent care when old.

"I don't want yo go in a home" isn't passive aggressive.
Its an expression of her wishes which she is entitled to make.
I imagine in 30 years you will be expressing the same wish